What To Do When Loved Ones Don’t Understand

Losing control of your body from multiple sclerosis can happen in a devastating series of losses over many years. But when your friends and family aren’t there for you, it’s a whole other kind of loss. What do you fear most—physical decline or abandonment? Decline would come as no surprise and there are things we can do to manage it. Rejection from a loved one can leave us feeling betrayed, helpless and unworthy. But there are ways we can weave a thread of connection with those we care for. Not all relationships can be salvaged, but we might develop a deeper, more authentic sense of connection with those that stay in—or come back to—the fold. Following is a compilation of thoughts from three bloggers with chronic illnesses.

From the group blog called WE ARE NONE OF US ALONE, We are Connected, is a list of suggestions for how you can manage sharing the news of your diagnosis and how to decide who to talk to from that point on:

  • Put an end to family secrets. Don’t try to protect your friends and family from bad news – communicate directly and openly with family members.
  • Include your children – even though their understanding of the illness may be limited, children appreciate being told what’s going on around them. Otherwise, children may believe that they are the cause of the serious illness or other events around them. Be open and honest with them, and allow them to ask questions.
  • Be clear about how friends and family can help you. People love to feel useful, so don’t be afraid to ask for help or favors.

Patient advocate Toni Bernhard, JD, shares four tips to help you communicate more skillfully with loved ones when chronic illness becomes an inescapable part of your life.

  1. Get help from a neutral third party. Often the best way to educate family and close friends about your diagnosis is to use a third party source because it takes the emotional component out of the equation.
  1. Write a letter. If loved ones are not being supportive even after you’ve tried to educate them about your illness, write a letter to them.
  1. Find non-illness related subjects to talk about. I had to learn how talk to others as a person with a chronic illness. At first, I assumed my family and close friends would want to know everything about my illness. Now I ask about their lives and talk about new interests that I’ve developed. It provides all of us with a much needed respite from thinking about my illness all the time.
  1. In the end . . . accept their limitations. Some family and close friends may never accept this change in your life. . . The best way to protect yourself is to cultivate compassion for them. If you can learn to wish them well despite their inability to support you, you can free yourself from the mental suffering that arises from your desire for them to be different than they are.

Last on the list is patient advocate Ilana Jacqueline, who wrote a blog for the Huffington Post in which she lists some nuggets of wisdom about loved ones that don’t understand:

  • No one is inherently evil and out to get you. People either understand or they don’t.
  • People change. Someone who might not support you today could reach out and learn how they can be a better relative tomorrow.
  • You can’t ask anyone to love you until you love yourself (sick, healthy or somewhere in-between).
  • Family comes out of the most ass-backwards places and people you might have never imagined even being friends with may one day offer you the most life-altering compassion.
  • Not everyone is meant to be in your life. You’ll know who when the relief settles in an hour after you’ve blocked their email and changed your number.

And Ilana’s final thought:

  • A well-lived life is the best revenge.

A common thread through all those contributions is the notion of developing empathy, understanding and patience for those able-bodied people who can’t get on board with the idea of chronic illness. I always try to remind myself that I was once one of them prior to 1998, and I felt then exactly what they do now. People who have had compassion to give have always given me a gift I can pay forward as well, and I have.1-3

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.
View References
  1. When chronic illness strikes: Tips on talking to family and close friends, by Toni Bernhard, JD, KevinMD, MAY 23, 2011. www.kevinm.com/blog
  2. How to Help a Friend with Chronic Illness, group blog. www.bandbacktogether.com
  3. How Do You Deal with Relatives Who Don’t Understand Your Chronic Illness? Ilana Jacqueline, freelance patient advocate, Huffpost Healthy Living, December 25, 2013 updated February 25, 2014. www.huffingtonpost.com

Comments

View Comments (4)
  • Mickle13
    2 years ago

    I moved from Wisconsin to Virginia to be near my son and his family. I had a support system in Wisconsin, but couldn’t bear to be away from my son, his wife and my granddaughters. I suffered a major relapse that they weren’t prepared for, and have found that they have no understanding about MS, its symptoms, and the devastation a relapse can leave behind. They are certain that if I just ate right and exercised I’d be fine.
    I’ve invited them to neurology appointments with me, and have begged them to just Google MS symptoms, all of which they had refused to do. They believe that my slurred speech and unsteady gait are due to taking my meds incorrectly, or abusing them. They know people with MS who are fully functional and are sure that MS isn’t the cause of my difficulties.
    They have quit trusting me with the care of my beautiful granddaughters, and my heart is broken. They won’t communicate with family in Wisconsin about this either.

  • Kim Dolce moderator author
    2 years ago

    Mickle13, I’m so sorry that your son’s family has taken a dismissive, bizarre attitude with you. What a terrible, hurtful situation. I hope you can maintain contact with your Wisconsin support system and find new sources of support in Virginia. Take good care.

    Kim

  • Betty
    3 years ago

    Thank you for the well written article on a topic many of us face.

    Following my early retirement from full time teaching as a result of MS, I relocated to Houston to be near family. My sister and her family live and work less than 10 miles away. Over the years, I’ve learned that my family has chosen not to be part of my care team. I’ve been “adopted” by my family of choice. These loving and caring people who live over 20 miles away have been here whenever needed. They have stayed with me, taken me to doctors’ appointments, gone to the grocery store and pharmacy, called, visited, texted, picked me up for social outings, and included me festivities, and festivities. I’m truly blessed.
    On April 17 and 18, Houston suffered a catastrophic flood. I live within one of the hardest hit areas. A nearby reservoir is expected to rise another 2 to 3 feet. Major arteries into my area are expected to be closed 4 to 6 weeks until the flood waters subside. My family of choice has been on stand by should I need help. My church family, friends, and acquaintances have kept in close contact to be of assistance if I need it.
    On April 23 I will be 75. The festivities have begun and will continue for weeks! Lunches, brunches, dinners, parties, cards, calls, a Jimmy Buffett concert!
    My sister is not in the picture. Her loss!

  • Kim Dolce moderator author
    3 years ago

    Hi Betty! I’m so sorry about all that misfortune, not the least of which is a natural disaster, yikes! So many of us have been lucky to find a new family of choice as you so wonderfully put it, and I’m glad that you have found yours. As an unnamed source has said, in a world full of meanness and apathy, we should look for the helpers, they are always out there somewhere. Thanks so much for your comments, happy birthday, and stay safe over there in Houston! 🙂

    Kim

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